Still in shock... and very scared

[GoodnessKnows]

I'm living a strange sort of surreal existence at the moment and would feels so much better to have a community 'who know' when most in RL don't and when I'm trundling along, pain free, all the while waiting in angst to be told when I'll be called for the tests:
www.londonsarcoma.org/downloads/Undergoing-Investigations.pdf
On Tuesday I was blown away to hear that my slightly achey hip is probably referred pain and that the real problem is a ruddy great tumour IN MY SPINE. Chronic bone erosion. Etcetera. I'm scared. Waiting to hear of tests above are on Wednesday or Saturday. They think it's benign. Either way it's in a dangerous place (nerves as at base of spine, bone erosion of spine). I'm shitting myself, quite frankly. Have told all close friends. Only my close family. Don't know what to respond when I'm asked 'how are you?' And "Looking forward to Xmas?" No. I'm not ok. I want to scream it.
I have a 3 and a 6 year old and I'm NOT ok. Not. Not. Fucking NOT!
Instead, I'm sitting around saying 'Yes lovely'. Feeling a fraud and wanting to tell everyone.
Just to feel less alone and terrified.
I am afraid that the cliquey mums will gossip and that my 6 y old will hear scary and incorrect things in the playground. I'm a teacher and have heard this sort of thing happen commonly. I'm so scared for him. My daughter is young and , all being well she won't know what's happening.

[Chottie]

Dear Goodness, first of all a huge unMN hug to you.

I have no medical knowledge, so just a few practical suggestions?

Is there anyone who can go with you to the tests?
Have you spoken to 6 years old teacher so she is aware?
Are you having any support from the hospital?

I am hoping that someone will post with details of help and support for you all as a family.

[Cheerymum]

No experience or wise words to offer other than some hand-holding. I would want to scream too. Normal to be terrified, Am sure some wiser mumsnetters than me will be along soon but I would say you need to talk to your six year old about it (in am age appropriate way) so she is forearmed before she goes back to school in Jan. Her worst fears will be worth than a simple explanation of the truth.
Hope you get the best news and outcome you can. Will be thinking of you.

[insanityscatching]

Offering my hand to hold too, we're living in that surreal existence too as we wait to find out whether or not the chemo dh has been on for ten years has stopped working or whether there is something else equally awful going on.
One foot in front of the other and don't forget to breathe has been my mantra whilst we wait for the results on Monday.
Thinking of you.

[GoodnessKnows]

Thank you both. Lovely not to be alone in the Scary Hours - when I'm awake, scared and worrying, but everyone else is asleep. I'm ok(ish) when busily distracted in the daytime. Apart from wanting to scream it. Lol
Bought make up for my hospital bag last night. Spent a fortune. Said I was going away but when the cosmetic counter lady asked 'anywhere nice?' I was thrown. I told her. That's why I needed waterproof mascara.
The rest, I didn't need. Lol
I've told his teacher. I've told my DS' nursery teacher too.
I'll have someone with me in the tests when they're allowed in the room. I feel so bad to be putting my mum and DH through this. So sad.
Of course it's unintentional but my mum has already been through so much with me (anorexia in my 20s) and is now reliving memories of her own tumour next to her pituitary brain. She's not ticket boo herself.
I feel like I'm going to become such a drain on them. On everyone.
So sad. I feel so sad.
I did chat lightly to my DS when we were alone. I'm quite good at putting things to children. I'm a teacher ( primary) of 14 years.
But it was astonishing how he tried to bat it off at the very outset. I said I had a bump on my back. The doc thinks they can take it off. Isn't that great. He responded adamantly and insistently that it was normal, because I was growing, everybody has one. He kept asking No No No. Even though I had a smile on my face and was not 'going in heavy' about it all. I then used a soup analogy. I said that he doesn't like the lumps in the soup I make. Yuk. We laughed. Imagine having one of those in your back! Yuuuuuk! We laughed some more. Wouldn't want to keep that in my back, would we! Then we continued to watch Peppa Pig. So the seed has been sewn.

[GoodnessKnows]

Saying not asking. Too many typos to correct. Please see through them ;)

[GoodnessKnows]

Insanity, must be torturous. Bet you want today to speed up! I pray that the results are positive and that the two scenarios you're thinking of don't transpire. It's so hard isn't it. As a partner it must be just as terrifying. You've been through ten years already. Must being all the initial anxiety up again - as well as current fears. Feeling for you.

[Wishfulmakeupping]

I went through waiting for a life changing diagnosis a couple of years back although my situation was quite different some of your post I could have written myself.
I hope you aren't waiting too long for your results too long personally the waiting was the hardest part once I had a result and knew what I was dealing with I could start to get my head around it all. I hope your result is ok x

[GoodnessKnows]

Thank you so much. Good to know that it's normal to find this part hard. I kind of think I should be able to do what some people have tried to suggest: put it out of my mind and think positively. Tbh, only one friend has said that... and I want to kill her! Lol no, I love her dearly but... how can I? My life and reality have just been turned upside down and put under threat.

[Wishfulmakeupping]

Not to sound horrible because your friend is only trying to help but I really think that unless you've had to deal with something similar you can't understand how desperate that person is feeling. I got a lot of 'think positive' etc but it made me feel worse I used to really resent how easy it was for other people to say that on their situation- now I realise that they were only trying to help and in all fairness nothing anyone said would have made me feel better.
Sounds like you have good people around you- I had people who literally would not talk about what was happening to me it was an elephant in the room but when I've spoke to th since its because they didn't want to upset me whereas at the time I thought its because they didn't care or didn't understand how huge it all was.

[Nishky]

I know someone who has had two lengthy operations to remove benign tumours from his spine

He has made very good recoveries - he has always been fit and he says that after the first one he did regain the level of fitness he had before, he hasn't got there yet after the second one but is getting there.

I know this probably won't help too much, but wanted you to know that someone else has been through similar thing

[GoodnessKnows]

It is really useful to understand things from those perspectives, Wishful. Dare I ask how you are now? I sincerely hope you're ok.
Mornings are shit. I want to wake people up just to talk to them. Telling good friends and hearing 'oh my gd, wtf, you poor thing, what can I do?' Helps.
But I've told all my close friends and now it's ... Quiet. I know I have friends I can call. But this might be a long-haul kinda thing. And I don't want to burn bridges by leaning too hard now or ever.
And there's nothing more to say. They've said it. I've said it. All there is is for me to repeat. 'Im scared and I can't believe it and I want to cry ... But can't because the children are up/ arguing/ need feeding.
:(

[Cheerymum]

It's ok to say that on a loop if you need to! On here at least, and with any real life friend with life experience. But try to take it in short chunks. A day at a time, or an hour at a time if need be. It's very hard dealing with the uncertainty of waiting for results, and it may be easier when they are through and you have a concrete plan to focus on.
But you are very much allowed to feel sad and scared on your own account, not just your family's - it's a shitty thing to happen. You will get through it, but that doesn't mean you have to act "brave" the whole time.

[Cheerymum]

BTW FWIW it sounds as though you ARE being incredibly brave, even if you don't feel it. And I love your lumpy soup analogy that you used with your DS.

[GoodnessKnows]

Thank you Cheery. Thank you ;)
It's hard to do the hour / day at a time bit but if does/ would help. I hate this period of uncertainty - questioning myself about every ache and pain. But I think I'll hate the next step more. It'll just be a day ( tests ) but it looks a bit awful.

[minmooch]

I hear you. We have lived this life for just over two years after my then nearly 16 year old was diagnosed with an aggressive brain tumour. I used to, and still do, get very cross when somebody said think positively, I'm sure he'll be ok. No you don't, the professionals don't know if he will be ok and whether I am positive or not will not change the outcome. He will either survive this ir it will kill him.

Two years on and we still don't know what the outcome will be, he's been through all the regular treatment, survived it but so has the tumour. He has many disabilities resulting from surgery or the tumour. I hate it when people ask me if I'm ready for Christmas, what am I doing, cheer up it may never happen etc. I've been ready for months incase I had to bring Christmas Day forward, I'm not really looking forward to it as cancer is always in the room and no I won't cheer up because it has already happened. Obviously I smile, say thank you, wish them a happy Christmas, turn away and cry silently.

It's plain shit. Waiting for a proper diagnosis and then for treatment to start. No way of forgetting, it is literally getting through every day - chocolate is the only way I get through.

Once treatment starts you can focus on that.

Being strong for everyone is very tiring and I am very grateful to have this place where I can be honest and one very good real life friend to whom I can say it as it is.

Much love to you.